lost daughter

[jonjo]

HI,
We have a 20 yr old daughter with severe cebral palsey qaudraparaplegia , she has learning difficulties and speech problems, she needs total care and we have done this gladly since we adopted her when she was 9 months old.
We have in that time only had 3 weeks holiday from our caring role in the time we have looked after her and the first time we went away for a weeks break was in 2005 so we did an 18 yr stint with no respite .
In 2006 we contacted adult services and asked for an assesment of our daughters care needs and an assesment of our needs as carers.
Our daughters was done and a package of 10 hrs per week for personal care was put forward in the form of direct payments , our assesment has never been done.
We fought as usual to get our daughter a place at yeovil collegewho have a special needs learning unit . this was the begining of our nightmare.
On the 19/03/07 at 7.45 am we put our daughter on the transport to college, we said bye have a good time see you later, she replied with yeah one of the few words she can say.
That to this day is the last time to this day that we have seen her spoke to her.
We received a knock at the door from adult care manager at 5 oclock that evening and said , your daughter does not want to live here anymore ,no contact not to know where she is .these are her wishes.
We were in total shock ,we still canot beleive that this is our daughter would want this as we are the only family she has got.
Our autistic son whom is 18 yrs old and goes to the same college(we adopted him when he was 5yrs old) came home when they had gone and said , i could not tell you about meetings at college ,tutor told me if i told you i would be taken away and i heard tutor tell sis that mum rang and said she didnt want to come to meetings as she did not want to care for you anymore.
Apparently they had meetings at college since feb and our autistic son was placed in meetings to represent the family.
There is a lot more that he has told us but our daughter is out there somewhere thinking we dont want her anymore , has anyone any ideas we were told we have no rights.
jon

[marie66]

Jon, my heart goes out to you,
I'm not sure what to advise having never been in this type of situation myself.

Can you consult a lawyer to at least get the facts from adult services alternatively citizens advice or Carers Centre maybe able to help point you in the right direction to deal with this dreadful situation.
I'm sure like here, all meetings must be recorded so surely a lawyer would be able to access information they have written about you and your family under data proyection laws.
I hope you get the help you require to start to sort this awful situation out.
marie

[leonine]

Dear Jon, I can't help about your rights but I wanted to say how sorry I am about your situation. You must be so desperate. Do you have a social worker who you could ask about what happened? I hope that one of the others may have some more constuctive advice. Sue

[Maryann]

Hello Jon

Welcome to the forum.

I'm sorry to hear your awful situation, but like the others I'm not too sure what your rights are, but surely being her legal guardian you have rights to know where she is and that she is being cared for properly. You must be at your wits end. If you ring Carerline tomorrow they will be able to advise you of your rights. They are open Wednesday and Thursday 10am-12pm and 2pm-4pm (0808 808 7777). I'm sorry I can't be of help, but please keep us posted!

Take care
Maryann x

[jonjo]

Many thanks for your replys,just to add that all we have been told is that its our daughters wishes ,no other explanation.
Those involved at these meetings do not know our daughter they do not know how to comunicate with her.
Our daughter has a dynavox speech aid whitch she operates with a swith on a chin strap, she was denied the use of this her only independent means of comunication as they said it was to slow.
Our daughter could not comunicate to us what was happening because this tutor kept it in her posesion since feb so she could not let us know what was happening.
O n the monday she left us she and our son were put together and he was asked to sign a consent form to leave. He refused.
This tutor then told our daughter that even if she changed her mind she would not be allowed home.Our son said his sis burst into tears and she was told to stop acting like a baby especially when she started crying MOMM NO GO MOMM NO GO.
This tutor then signed the form herself and took our daughter to a care home. Our son was physically prevented from using telephones, since then even he is not allowed near his sister or to even talk to her.
why ,what are thes people afraid of.
We have not a problem if this is our daughters wishes but we feel that she has been emotionally abused by this tutor and miss reprosented.
If there was a concern in the first instant why were we not informed .
We just dont know.
jon

[Myrtle]

That is absolutely terrible! Legalised kidnapping
Surely these people have no rights to do this without consulting you, the parents.
I would consult a lawyer, who should be able to access the meeting records and talk to your daughter as a 'third party'.
I do hope this works out for you and I'm so sorry for the anguish you must all be going through.

[jonjo]

Hi,
Have consulted lawyers and they are stuck on the same point that she is 20yrs old, and able to make decisions for herself.What is wrong is that these people do not know at what level of understanding our daughter has to make life changing decisions ,this is why they now want to find out but they tell and ask us nothing because she is 20.
To be told by these people tht our daughter does not need a legal gardian and you as her parents and carers are not required in her life anymore is a joke .
Now it appears that if you have a disabled sibling over the age of 18yrs of age no matter how severe their mental or physical disability you as parent or carer have no rights to act on their behalf.
jon

[Myrtle]

I had a very good friend, whose son had mental health problems. He would not keep his hospital appointments so they 'presumed' he was better. His parents tried everything to get some help but were told that as he was over 18, they could do nothing, it had to come from him, unless something happened to get him sectioned. Well, it did. He is now in a high seurity unit, mentally unfit for trial and my friend is dead.

[jonjo]

My god myrtle,
What the hell is going on with this country, i believe in disabled rights but there is a point that when an indevidual cannot look after their own affairs then legal gardians should be allowed to take control.
Our autistic son came from a background where his mother was an alcoholic his father was an alcoholic and there was a history of mental and physical abuse.
He had by the time of 5yrs of age before we adopted him had 13 foster homes some only lasting a few days.
He has been with us now for 13 yrs but still has an attachment disorder .
His college are taking him to spain for a trip and his tutor has told him he can have alcohol, now we have said no because there is a 95% chance of him being an alcoholic .
Would you say we are going against his rights or medically have a good reason for stopping something that could soon spiral out of control.
This is the problem we have as carers.
jon

[Myrtle]

The trouble with 'rights' is the fact that what is 'right' for one is 'wrong' for another and often what is regarded as someone's 'right' is actually very bad for them. And the person who decides whose 'right' is right usually basis their assumption on hearsay